I’m sorry it has taken so long for me to get round to updating you all with the goings on in the H-M household. Things here are hectic as usual. Mum is settling in to life on oxygen and using a wheelchair whilst we are getting used to oxygen tubing trailing around the house, oxygen cylinders dotted everywhere and dealing with the intricacies of a wheelchair!
Massimo is doing really well now, but more of that in a minute. Massimo spent a good weekend (last weekend – ie 27th,28th) in Freddy Hewitt ward but his breathing was getting more and more rattly and he seemed to be wheezing more and more. Suctioning of his trachy seemed not to improve things. On Sunday morning I came home when Massimo had his lunchtime nap and Justin went in a little later and stayed with him until the evening. That night SGH had arranged for Massimo to be ‘specialled’, ie have an extra nurse on duty just to look after him and by 7 pm he was asleep, so I did not return that night.
The following morning, Mum had an appointment at SGH and I went up to the ward after that, probably at around 11 or 11.30. On my way towards Massimo’s cubicle, I was stopped by the doctor who was doing his rounds and he explained that they had done a trachy change that morning and that Massimo was now resting. I walked in and picked him up, much to the chagrin of the nurse who was in there with him. As soon as I had him in my arms I realised that he was very hot and he did not seem to be responding to me at all. Massimo’s breathing was still very loud and rattly and Helen, his community nurse, came to tell us that she had been present at the trachy change and had been a part of the decision to change it, for which I was eternally grateful. When the nurse checked his temperature it was 38.6�C (101�F) and she checked it again half an hour later and it had risen to 39.2�C (102.5�F). At some point in my distress I called J at the office and he came over as soon as possible.
Massimo’s eyes did not seem to be focussing well, they seemed to do a lot of rolling and his eyelids seemed to be flickering a lot. We brought this to the attention of the doctors but nothing came of it. The doctor, although she listened to us, seemed to be at a loss about what to do.
At around 1 pm, Justin and I were in Massimo’s cubicle talking to Helen and the head of Paediatric Nursing for SGH. We hadn’t been talking long when the constant noise of Massimo’s breathing stopped. We sprang into action calling his name, “bagging” him (using an ambu-bag to breathe for him) and calling for help. In a matter of seconds the room filled up with doctors and nurses. We stopped “bagging” him and tried to get him to start breathing on his own. His saturation levels did drop to a very low figure but he did start breathing again on his own. He was given anti-convulsants as it looked as though he had had a seizure. He did settle down and the doctors took samples of everything they could think off to send to the labs for testing. A doctor came up from PICU (Paediatric Intensive Care Unit) to assess him for transfer to their unit and a few hours later we were there.
Massimo’s breathing seemed to have improved after his seizure and the rattling, wheezing and whistling seemed to have stopped. T., a wonderful PICU nurse (not that the others aren’t wonderful too but she was there in his hour of need!), gave him some serious physiotherapy and loosed and removed a large amount of secretions that he seemed to have stuck deep in his lungs. From this point things improved. He was put on CPAP which helped his breathing and given 60% oxygen (21% is air), which they weaned down to 40% quite quickly.They also started a course of general antibiotics in the hope of catching any infection that he might have.
By Wednesday he was nearly off CPAP completely (only on at night a little) and just on a bit of oxygen. His eyes, although still rolling, seemed as if he had regained a little control over them. And he started smiling at us again! Every day his eyes improved and his breathing improved. They found that his hickman line was blocked and they injected some stuff in it to try to unblock it. The second time they gave his hickman line this stuff it seemed to work. They also found that he had an infection in the line so as soon as it was unblocked (Wednesday pm) they gave him his chemo which was due, and started a course of intravenous (directly into his hickman line) vancomycin antibiotic.
By Friday he was really well and there was talk of moving him back to the general ward. Justin and I had been, and continue to, express our reservations about Massimo being on the ward as we know that unless someone is in the room with him, they have no way of assessing his need for suctioning. The ward is very noisy and just stepping out of his cubicle means that you can’t hear him. We are aware that on the ward, Massimo has to share a nurse with other patients, but in order for J and I to be happy with his care, we feel that one of us needs to be with him. There are many issues to this argument and this is not the place to discuss them, however Massimo was kept on PICU on Friday night even though he was well enough to return to the ward and on Saturday morning we had a long and satisfactory chat with the Modern Matron of PICU.
Massimo has remained on PICU until today and has continued to improve. He is back to his old self and is only being kept in hospital because he is still on intravenous continuous antibiotics. We were told that the course of antibiotics was for 7-10 days but at doctors’ rounds this morning they decided that he should continue the treatment for 10 days. He will therefore unfortunately not be coming home tomorrow which is what we had been hoping for.
At around 5 pm we were told that they would be transferring Massimo back to Freddie Hewitt and I was on my way in to see him with his Grandpa and Mal. I stayed with him and J joined us at around 7 pm. We were told that Massimo had been ‘specialled’ for the night but that the ward did not have the staff for him until the night shift started. We all went up to the ward at around 7.45 pm and when we got there we realised that there were no cubicles available and that Massimo was being put in an open ward. A serious discussion started at this point as we do not feel that a baby who has not had his full set of immunisations, who is undergoing chemotherapy (although not immuno-compromised yet) and with all Massimo’s other bits and pieces should be place on an open ward. A cubicle was found for him on Pinckney and we finally transferred him at around 10 pm. By the time we got home it was nearly 11 pm and we had not had supper yet! Luckily Massimo had his nurse and we could leave him, secure in the knowledge that he is getting really good care. The biggest irritation is that he needs to stay in hospital until Saturday to continue taking his antibiotics which must be given intravenously and continuously for them to work most efficiently.